Looking for comments about Jemperli/dostarlimab

KHoltgraver

I am a 73-year-old female, diagnosed with an aggressive form of endometrial cancer (EC), type IIIC1 dMMR. I had a complete hysterectomy last fall with no obvious signs of spread to nearby organs but did have one lymph node show microsized cancer cells. I've since received 7 infusions of Jemperli (6 infusions with paxitaxil and carboplatin) plus a single infusion alone of Jemperli. I also had 25 radiation sessions to the base of my pelvis. I am currently considered without disease but I am also aware that EC has a nasty habit of recurring. Recently, at what was to be my 8th Jemperli infusion, my doctors ultimately determined that I had developed complete cortisol insufficiency. In short, the Jemperli trashed my adrenal glands and I will have to take hydrocortisone for the rest of my life. Jemperli has many known side effects but I'm having difficulty determining if the side effects will continue to add up if I continue the immunotherapy. Does anyone have any information to share about this? TIA.

Forherself

I just wanted to say we are here for you. I had serous endometrial cancer 7 years ago with no recurrence so there is hope. I did not take those medications, but there are women here who have and I hope they comment. Did your doctors reduce the dose of the Jemperli? Some women here have said that is what they did when side effects were serious. I'm sorry to hear about your adrenal glands. Is it a rare side effect? At least it. is a a doable treatment. Hopefully others will comment soon. Zsazsa1 had a similar case to you. I don't know if she took Jemperli though. She is 7. years out too with no recurrence.

abume

Sorry to hear of your reaction to Jemperli. I am also on Jemperli for maintenance of serous carcinoma. I was originally diagnosed with carcinosarcoma a more aggressive form of endometrial cancer. Jemperli was included in my 9 infusions for chemo. Then I was moved to Jemperli alone for maintenance. First infusion was uneventful. A week after the 2nd infusion I developed a rash in a few spots on my body. The itching was so bad that I ended up in the ER. The dosage has since been reduced by 50% and infusion changed from every 6 weeks to 3 weeks. I just got it 6 days ago, with allergy drugs. Keeping my fingers crossed that there is no reaction.

To answer your question, not sure whether Jemperli has a cumulative side effect, however hopefully reducing the dosage by half might help hopefully.

Best of luck!

NoTimeForCancer

https://csn.cancer.org/discussion/comment/1723432#Comment_1723432

Thank you for sharing your experience, abume. These newer drugs show positive results in clinical trials but there is still a lot of unknowns.

@KHoltgraver dMMR is one of the markers that have had a lot of response (positive) to the newer drugs, however, everyone is different and we all react differently. I'm not sure how members are using Jemperli but I hope they post to help educate all of us on how it is going.

Hugs ladies

Subesube

I will be using jemperli alone after round 5 and 6 combo chemo . Interested to hear more of peoples success or lack there of

Thanks

abume

https://csn.cancer.org/discussion/comment/1723579#Comment_1723579

Jemperli was part of my frontline chemo treatment. I received 6 infusions, surgery then another 3. Then proceeded to maintenance on only Jemperli since April. Just had my first scan and unfortunately Jemperli did not work. The tumors grew and there was new growth. Will see my gyn onc on Tuesday for next steps.

Jemperli however does work for some people. I only wish I had checked on whether it was working for me, earlier than now....

Subesube

if I’m understanding correctly, 3 month immuno, then scan with new disease ?

Ugh

Good luck Tuesdays….

abume

https://csn.cancer.org/discussion/comment/1723582#Comment_1723582

Yup😓

Subesube

can I ask where your treated ? Or is that not cool ?

abume

https://csn.cancer.org/discussion/comment/1723592#Comment_1723592

Why not....Northwestern, Chicagoland

abume

I realize now that I should have requested other tests (CA125, Signatera) way before now instead of waiting for the 3 month scan especially since I was trying a new regimen.....

Subesube

annoys me that your team didn’t suggest the labs in between

But you taught me and I will certainly make sure that’s my path

I go thru Sloan in NY

KHoltgraver

https://csn.cancer.org/discussion/comment/1723594#Comment_1723594

abume, sounds like you've had a rough time of it. Did your infusions also include chemo drugs? I had those lab tests prior to every infusion. The CA125 isn't always a definitive marker for uterine or ovarian cancer. It can also indicate inflammation. Mine was 19 before surgery and has hovered between 4 and 7. The 7 came when my body was about to go into adrenal crises.

abume

https://csn.cancer.org/discussion/comment/1723601#Comment_1723601

My earlier infusions were carbo/taxol/Jemperli only. My most recent CA125 went from 5 to 16 and this is the only time it has gone up instead of down. So if done earlier it would have raised a red flag.

Subesube

16 is still in normal range .. they told me to expect fluctuations

But your scan came back differently …

Just shows how it has to be an indicator , comparing with clinical . Yet I’m such a number person !

abume

https://csn.cancer.org/discussion/comment/1723616#Comment_1723616

My experience now is that the numbers can be unreliable, you are right, 16 is still within normal range. Even my oncologist ( not gyn onc) was puzzled, the numbers do not match the scan. Also signatera was negative!!

Subesube

I’ve never heard of signatura? I have to look it up

KHoltgraver

https://csn.cancer.org/discussion/comment/1723428#Comment_1723428

Forherself, I apologize. I just realized that I never responded to your comments. Thank you for commenting. Every little piece of information is helpful. My side effect is considered very rare and serious. The Jemperli caused my T-cells to attack my pituitary gland, specifically the area that tells the adrenal glands to do its job. My endocrinologist told me that adrenal function will not return and I could easily experience adrenal crisis (unconsciousness and potential death) if I don't or can't take the pills. This side effect showed up at my 7th infusion and was very scary. No appetite (and I mean zero. I had a difficult time forcing myself to eat, which is rare for me, lol.), my heart rate was well over 100, blood pressure 110/60, far lower than my normal). Fatigue so bad I could barely make it up the stairs. My 8th infusion is scheduled for this coming Thursday as they are 6 weeks apart, and I am loath to continue given the seriousness of the initial side effect. Most people on this thread experienced a rash and joint pain, which was resolved rather quickly with a reduced dose. Because the drug can cause damage months or years down the road, I am now very reluctant to continue. I'll let everyone know what I ultimately decide.